Meet Wheeler, a toddler battling a rare condition called Juvenile Batten disease that’s gradually stealing his childhood. The clock’s ticking, but there’s a glimmer of hope: a drug called miglustat that could delay his disease’s progression. Problem is, it’s not FDA-approved for Wheeler’s condition, and a clinical trial is still a year away. As Wheeler’s life hangs in the balance, it’s time for the FDA to rethink its approach to rare diseases, remove obstacles, and help save lives by harnessing the same urgency and innovation seen in Operation Warp Speed. Time’s running out, but hope never does. Read full article here
Societal Issues
To curb drug deaths, communities turn to Reddit, texts and wastewater
With drug overdose deaths on the rise, authorities are attempting to curb the epidemic by tracking and sharing information in real time. In one unique effort, a nonprofit in New York City is using drug-testing equipment and stamping or marking habits of dealers to identify drug batches that may endanger users. Other approaches are also being used, such as monitoring drug-related chatter on Reddit and analyzing local wastewater for opioid and other drug levels. With the combination of these efforts, researchers hope to put a dent in the opioid crisis and reduce overdose deaths. Read full article here
Merv
June 1, 2023
